I Have Multiple Sclerosis Who to Tell and How to Say It

When talking to others about your Multiple Sclerosis, keep in mind that one size doesn’t fit all. Since you may have very different reasons for disclosing to different people in your life, your explanation needs to be tailored to the situation and the particular person. And because no two people are alike, no two responses to your disclosure are likely to be the same.

Family members

Disclosing your MS to those closest to you — particularly those who know you well enough to know when something is wrong anyway — is the best way to rally the support you need to begin the coping process.

Friends

There’s no need to tell everyone at once, so start with those friends with whom you feel most comfortable. With time, you’ll be able to decide how much you want to share and with whom you want to share it.

People You are Dating

How soon to tell… how much to tell… what to expect… are common concerns for anyone who is “out there” trying to meet someone. While there’s no need to tell all on a first date, remember that secrets don’t lay a very good foundation for a lasting relationship — so think about disclosing at the point that you would like to know important information about the other person.

Employers and colleagues

Disclosure in the workplace can have a significant impact on your job security, employment options, and career path. Before disclosing your MS in the workplace, learn about your rights under the Americans with Disabilities Act (ADA) and think carefully through the pros and cons of sharing this personal information.

Questions to Ask Yourself

Here are some important things to ask yourself as you talk about your Multiple Sclerosis with other people. Asking yourself these questions ahead of time will help you figure out the best way to present the information to each person, and will help you prepare for the various kinds of responses you are likely to get.

Why do you want the person to know?

To share personal information with an important person in your life? To explain recent physical or emotional changes? To rally assistance and support?

What do you want this person to understand about your MS?

What MS is? How it affects you? How changeable and unpredictable it is? What you’re doing to treat it? That it’s not contagious? That it’s not fatal? That it’s not something else?

What is the best way to deliver the information?

In a face-to-face conversation? With a pamphlet that the person can take and read? By reading a book about Multiple Sclerosis together? By watching an online program together? By attending an education meeting together?

What kind of response do you expect you get?

Shocked silence? Sadness and tears? Fear? Lots of questions? Stories about other people with Multiple Sclerosis? Suggestions for what you should do? Offers of assistance? A hug?

Things to Think About

Shock and distress may make it difficult for some people to respond — so be prepared to give them time to deal with the news. You may need to provide comfort and reassurance at just the time that you are needing comfort and reassurance yourself. When people don’t know what to say, they may say nothing at all — so be careful not to misinterpret silence as not caring. Most people will take their cue from you — so be ready to let them know whether you want to talk about your Multiple Sclerosis, if you’re willing to answer questions, and if you need something from them.

Brittany Haugen, Education Manager

WHO TO TELL AND HOW TO SAY IT: DISCLOSURE FOR THE NEWLY DIAGNOSED

We know it can be difficult to hear the words "You have MS." There are so many questions that arise in the first few years about what the diagnosis means for you, how it will impact your relationships and career, and how to manage the chronic nature of the disease. This teleconference will address how to cope with the new "uninvited guest" in your relationships with family and friends and how navigate through the disclosure and accommodations process in the workplace.

Guest Speakers:

Melissa Bruno, Christina L. Forster, and Steven W. Nissen

Melissa Bruno, MSW, LSW, MSCIR, MSSMC is the Client Services Manager at the Greater Delaware Valley Chapter. Before joining the Society, Melissa worked as a social worker for the Comprehensive Multiple Sclerosis Center at Thomas Jefferson University. Melissa also completed an internship at Family and Community Medicine located at Thomas Jefferson University in Philadelphia, PA. Melissa has a MSW from the University of Pennsylvania School of Social Policy and Practice and is currently licensed in the state of Pennsylvania.

Christina L. Forster, MA, CRCis the Employment Services Manager at the Greater Delaware Valley Chapter. Before joining the Society in 2009, Christina worked as a rehabilitation counselor for the Virginia Department of Rehabilitative Services, the state vocational rehabilitation agency. Christina also completed an internship at the National Capital Chapter of the National Multiple Sclerosis Society in Washington, DC. Christina has an MA degree in rehabilitation counseling and is a certified rehabilitation counselor.

Steven W. Nissen, M.S., CRC is the Senior Director of Employment and Community Programs at the National Capital Chapter in Washington, DC. Steve has a B.S. degree in psychology, M.S. degree in rehabilitation counseling, and is a Certified Rehabilitation Counselor. Prior to joining the National MS Society, he worked for Virginia Department of Rehabilitative Services (DRS), the state vocational rehabilitation agency, and also worked for a private vocational rehabilitation and case management company where he assisted individuals with physical disabilities. Steve co-authored Employment Issues and Multiple Sclerosis, 2nd edition.